I was diagnosed with my first chronic illness when I was two-years-old. It was then that I learned that I have juvenile rheumatoid arthritis, which has since come to be known in the medical community as juvenile idiopathic arthritis (JIA). JIA is a form of arthritis that is found in children, but can affect them into adulthood (which has been the case for me). JIA was very difficult for me to deal with as a child, but is fairly well-controlled now by medicine. In the years since then, I have received many more diagnoses. There are a lot of factors affecting my health. The two biggest conditions that I deal with now are chronic migraines and postural orthostatic tachycardia syndrome (POTS).
Chronic migraines are just what they sound like – migraines that won’t go away. I like to describe it as having a baseline headache all the time which fluctuates to a full-blown migraine two to three times a week. So far, my chronic migraines have not responded to any treatment – conventional or unconventional, old or new, nothing has made a dent. POTS is more complicated to explain. It is a form of dysautonomia, which is a dysfunction of the autonomic nervous system. The autonomic nervous system is responsible for things your body does that you don’t have to think about, like breathing and your heart beating. POTS is characterized by an increase in heart rate upon standing because your body does not move blood to your brain quickly enough. All of this means that when you stand up, you might pass out. Other POTS symptoms include fatigue, shortness of breath, low energy, and difficulty concentrating.
I’ve been through a lot because of these chronic illnesses. Living with them means living a completely different lifestyle from most of those around me. But I also feel that I have been blessed because of them. I have travelled to some really cool places for treatment that I probably wouldn’t have seen otherwise. I have met so many amazing people (doctors, nurses, and other healthcare professionals) who have left lasting marks on my life. I feel like I have become a stronger, braver person, and I have a greater understanding of who I am and what matters to me.
Whether you are dealing with chronic illnesses yourself, you know someone who is, or you’re just curious about it all, I hope this blog can give you an accurate look at what life with chronic illness is like – and at what it’s like to live chronic and courageous.
Chronic and Courageous 